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Caring for terminally ill at home under spotlight

Nurses and carers are being urged to participate in new research on end-of-life care networks.

Supporting more terminally ill patients to carry out their wish to die at home is the focus of a new study led by researchers at the University of Western Sydney.

The research, funded by the Australian Research Council in partnership with Cancer Council NSW, will examine the development of informal care networks for people dying at home and their interaction with formal care.

In 2010, the Caring at End of Life study asked members of the community to share their experiences of caring for a loved-one with a terminal illness at home. Associate Professor Debbie Horsfall, the lead researcher from the UWS School of Social Sciences and Psychology, said 96 people came forward and gave the researchers a valuable insight into the day-to-day challenges of caring.

“The common view was that caring for a loved one at home was an immense task, which required a whole network of support – of friends, neighbours, family, work colleagues and community members all pitching-in to help,” said Horsfall.

“Encouragingly, the majority of the participants found that this help was available. In their times of need, informal care networks were established within their communities and these networks grew and became more active and supportive as time went on.”

People who provide support to patients in their homes are now being called upon to also share their experiences as researchers undertake the next phase of the study. Horsfall said the support workers will be asked to participate in focus groups and discuss their encounters with informal care networks, and the ways they have worked alongside each other to provide care and support.

“We are hoping to involve people who provide in home formal supports, including nurses, respite and in-home support workers, and transport volunteers,” she said.

The research project is being conducted by Horsfall from the University of Western Sydney, in partnership with Dr John Rosenberg from Calvary Centre for Palliative Care Research ACT,

Associate Professor Rosemary Leonard from CSIRO and Gillian Batt from Cancer Council NSW.

For more information or to participate in the research, contact Research Assistant Niki Read on (02) 4736 0368 or visit www.caringatendoflife.wordpress.com

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